Saturday, January 26, 2008

Announcing what's next

Twice today, T has let us know that he knows what's coming up next. This is a really cool new thing. We were driving to a restaurant, and out of the blue this little voice from the back seat says "Go eat." Why, yes we were going to go eat! Then on the way home, unprompted, that same glorious little voice said "See Chester" (our dog.)

This is an expansion of something we've heard in the mornings recently. On our way to school every morning this week, he's said "See Brett" (Brett is his morning therapist.) There was a morning a few weeks ago that Brett was not there, so another therapist came out to the car to get T. To this, T responded "I want Brett." And apparently, he did the same thing for his afternoon therapist when she wasn't there, and said to the substitute "I want Kimberly."

We've been working hard on him saying "Hi Brett" and "Bye Mama" when we get there, and that is coming along nicely but slowly.

2-3 word sentences. So glorious!!!

Friday, January 25, 2008


T ended up entertaining himself for much of the afternoon & evening yesterday. He usually comes home from the verbal behavior school and watches a video while having a snack, after working hard all day. I am either napping on the couch near him or on the computer tending to stuff - and yesterday, it was paying bills, balancing accounts, etc. This took longer than usual, so I really didn't interact with him much before dinner. After dinner, Rob & I watched the news and then enjoyed a post-dinner conversation, so T was still just entertaining himself. He does this most evenings after dinner by walking an invisible circuit around the kitchen & family room. Only last night, I think he had been alone too long, and felt it...around 7:15, he stopped by the fridge, looked at me & Rob, and started to frown. The lower lip started quivering, and tears built up in his eyes. Nearly broke our hearts. We asked him what was wrong, and he did make some sounds - his jibberish that sounds SO much like words - and once again, I wished so desperately that he could talk and tell us what was making him cry. So I took a guess, asked him if he was bored & lonely, gave him a big hug, and took him into the family room where we played with bubbles and the thunder tubes his grandparents gave him a few weeks ago. Before long, he was smiling and laughing, and all was well.

Okay, so I think it is reasonable to assume that he was wanting our company - that he was bored and lonely after all. I thought kids with autism weren't supposed to be social, that they preferred to be alone and were completely self-absorbed in their own world. NOT MY KID!!! He does have those tendencies some of the time, but clearly not all the time.

I just love this little guy.

Tuesday, January 15, 2008

What kind of world do you want?

One of T's teachers forwarded this video on to me today. I think it is well done, and worth viewing (of course, I'm probably preaching to the choir here, but regardless...) It speaks to the huge need for health insurance mandates for treatments for autism. It absolutely stuns me that insurance isn't covering treatments for our kiddos in a vast majority of states around the country, and makes me so very concerned for what's in store as these children go through school and then become adults and have to make their way in society.

I try not to dwell on the future too much. I used to worry incessantly and freak out about T's future. Somewhere along the way, I had a lightbulb moment (or perhaps one of my God Moments). As clear as day, the realization sunk in that the only way to take care of T's future is to do my absolute best for him today, tomorrow and next week. There's no way to know what's in store, no road map for us on this journey. But if we focus on the present - what therapies does he need, is he getting them, is this schooling situation working for him, is he making progress, etc., then the future will take care of itself. We've set up a Special Needs Trust for him so that he'll have financial resources when Rob & I are no longer around, and done all the legal planning we can. Those are things we can control. Schooling, college, independent living, employment...all these things are out of our control at this moment in time. But taking care of him now - that's the only way to assure the best outcomes for those other concerns in the future.

Monday, January 14, 2008

A Happy 2008 so far

We've done it – T is off all dietary restrictions. No more Specific Carbohydrate Diet or Gluten Free Casein Free diets. And the great news is that we've seen no negative side effects since reintroducing normal foods back into his diet…in fact, he has had completely normal poops for nearly 10 days now. He smiles a lot, looks at us more, makes more attempts to communicate, and is SO happy when I put that peanut butter sandwich on wheat bread in front of him. Glorious! I'm so happy for him, and I'm so glad to have my life back after months of making so much food from scratch. I would have gladly done that baking for the rest of my life if we had seen improvements in T's behavior and poops, but we didn't, and I'm not shedding any tears over the diet chapter of his life being done. We will continue to feed him as clean, organic and chemical-free a diet as possible – that's good for anyone – but no more autism diets. THEY DIDN'T WORK FOR HIM!!!

Ah, the double edged sword of these biomedical treatments: they give you hope, but they don't always work. I have a friend here who humbles me (and honestly, concerns me) with just how far she's willing to go with the biomedical interventions. Her beloved son is 4 and they've done over 2 years of biomedical treatments on him, with little to show for it. Her heart is breaking, and mine breaks for her. At coffee this morning I told her just how dedicated she is, and how blown away I am by her drive and energy and willingness to try anything to help her little guy. "You've tried everything", I told her. "And it hasn't made one bit of difference", she said, eyes lowering and holding back tears. To you, dear friend, I say, OF COURSE it's made a difference! You know what doesn't work! You love your son! You've TRIED, and can have some peace of mind knowing that at least you've left no stone unturned. But it doesn't matter to her. She's devastated, and it makes me so angry for her. The DAN! Approach does offer hope for improvement, and many children have been helped, but on the other hand, when nothing else has helped and this carrot of hope is dangled in front of you, always just out of reach for some, it hardens the blow when these interventions don't work either.

I haven't had the same reaction this friend is experiencing. I'm relieved that we tried it, and equally relieved that it didn't work. I know that we gave it as close to a scientific trial as we could have, and we didn't see the results we were supposed to. It's going to allow me to have more time to be a mommy to T instead of cooking all the time and mixing supplements into nut butters. We aren't giving up on all the DAN! Stuff, we're just stopping the special diets.

T and I made chocolate chip cookies on Saturday. We hadn't done that in 11 months. He remembered though, and reached up for the mixing blade when I was done mixing the batter. I paused for a moment, wondering about the raw eggs in the batter, and then thought "What the hell? He's been deprived for so long, and I have eaten WAY too much raw cookie dough to have any reasonable argument as to why he shouldn't have any." So I handed it to him, and he was in sheer 6 year old bliss for about 15 minutes, carefully fingering off each little smear of dough. I'm so happy to have these moments with him again.

Pregnancy books

Recently as I was organizing my office, I put all of my pregnancy books (What to Expect When You’re Expecting, Your Pregnancy Day by Day, etc) in my closet and closed the door. I am trying to allow myself to feel what I feel and not suppress emotions, but instead honor them. When I looked at those books, I remembered back to my pregnancy…such a happy, joyful time filled with planning, dreaming, imagining…it makes me want to be pregnant again, once more in my lifetime, just to feel that way again. But no doubt about it, I would get angry whenever I’d see them in my office. This confused me, so I allowed myself to really sit and think about why I was getting angry when I saw them. The answer that came to me was this: I really believed, truly believed, that if I read those books and took all their advice and rested and pampered myself and went to all my prenatal visits and got the healthcare that was recommended that everything would be fine.

Perhaps on many levels, things are fine. T is healthy and is really happy now that he’s off the SCD & GFCF diets. Rob & I are still doing really well despite the statistics we hear about divorce rates among parents of children with autism. T is making good progress with going full time into Verbal Behavior therapy. We are blessed to see consistent progress, and to have so many wonderful, dedicated people working with him and loving him.

But on many other levels, things didn’t turn out fine. Despite pouring over those damn books and following every recommendation and rule and having a near perfect pregnancy, our son is autistic. He struggles to communicate and has odd behaviors that make people stare and some behaviors that alienate him (the eagle shriek, for one.) We have no idea whether he’ll ever to go a public school, go to college, live independently, have someone who will love him and have a family with him. I’ll never know for sure if the flu or RhoGam shots I had (both at my OB’s recommendation) had anything to do with creating a “toxic event” for him in utero. (I don’t blame myself for this, but it will always be an unanswered question for me.) Recent research points to genetic causes – changes in the DNA at chromosome 16 – but the genetic testing T had didn’t show any problems.

So I read the books, I followed the rules, and everything wasn’t fine. Despite it all, sometimes, unfair and bad things happen. It made me want to scream and rip the pages from those books and burn them so I never have to look at them again.

I don’t want this to sound like I don’t love T or think he’s wonderful. He IS wonderful, and I love him with every cell of my being. He is flesh of my flesh and I will do everything I can to be the best mommy he could possibly have. Absolutely and positively, without a doubt, he is a glorious child and an angel sent down to be with us. And we have been given the responsibility of raising this wonderful little boy, which we accept wholeheartedly.

I just don’t want to have to look at those damn books anymore. What’s done is done.

Saturday, January 05, 2008

This Year’s Christmas

I may just have to do bullet points here:

  • T opened his presents this year. He sat with us, and opened his presents. This is the first time he's done this, and he needed a little assistance occasionally, but by God, he did it.
  • He was allowed to eat a few Christmas cookies – and they weren't GFCF or SCD legal. No noticeable change in diaper contents at the time.
  • He is making more eye contact when requesting things he wants. In fact, he'll walk to another room to bring us what he'd like (fill my juice cup, put this DVD in), and can respond verbally when asked "What do you want?"
  • He's making faces at himself in mirrors and really having a good time.
  • He's getting better and better at saying "Night night, mommy" at bedtime.
  • We started Epsom salt baths.
  • We're continuing Methyl B-12 injections, and it is not a traumatic event anymore. In fact, he turns around for me, gives Rob a hug, and it's done without a single tear shed.
  • Major, major event: He cried when he had to say goodbye to Auntie J, Grandma & Grandpa after Christmas. Understand that he has never, ever displayed separation anxiety, even for me.

I'd say we've had a great holiday! But most important, T is a happier boy than a month ago. What a relief. School is good, therapies are good, diapers are getting better…geez, part of me is waiting for the other shoe to drop, but I'm enjoying this, damn it! And I'm ready for 2008.

Normal poop!

Quick entry – I have a lot to update about Christmas another time – but I just had to report that T had a normal poop today. In fact, he had two – after not pooping for two days in a row. He is happy, energetic…

He’s been eating peanut butter sandwiches on whole wheat bread, cheese, rice crackers that are not GF (gluten free), and other things that he hasn’t eaten in 11 months.

The child is the best lab, the child is the best lab…